"polycythemia Vera Is A Long Road That Never Ends " 2

It has been a long time since i have posted ,well over a year.So much has happened and i have been so busy in my struggle for survival for me and my wife who has polycythemia vera.She finally got her disability decision one year ago from the Administrative Law Judge "ALJ" It was an unfavorable decision and is so wrong and distorted  that i cry every time i think about it or read it.In his twelve page explanatory letter the ALJ  ignores credible testimony supporting my wifes claim of inability to work, made by me ,her husband and her children and friends.He ignores testimony by treating physicians and bases his ruling on two doctors opinion that have never seen my wife,they were just sent some of her medical records to look at. In his letter the judge bases his ruling on their testimony and calls them medical experts, which is absurd,i didnt recognize the mental doctor but the so called physical medical expert has been retired and absent from the medical field for 15 years i know because he was my mothers internal medicine doctor years ago and i have been to him several times 20 some odd years ago he retired 15 years ago.The whole 12 pages almost everything stated is either false or altered .Despite testimony from family and friends ,despite testimony and medical assessment from treating physicians and psychiatrists  and despite exceptional and extensive medical records all supporting her claim of disability she was denied by this ALJ. This decision devastated our already destroyed lives.Her attorney filed an appeal to the SSD Apeals Council and although expecting a year wait she got a denial decision from them in 6 months.We got a different attorney to take her case, as her attorney representing her blew it he didnt even look at her medical records before entering the court room with my wife , i know because i gave him some critical evidence that he didnt have, i was not allowed in the court room per protocol of her attorney not allowing spouses in the court room.The new attorney took the case on contingency and her  case has been in federal court now for about 5 months,it is our last hope to get some sort of life back as it is the last appeals avenue in the long process trying to attain a benefit that you have payed your whole life for but may never get. With polycythemia vera the quality of life depends on timely and continued treatment by monitoring the blood and treating accordingly to maintain a normal blood viscosity .When symptoms appear ( itching,headache,fatigue, joint pain,abdominal pain,dizziness and forgetfulness ) just to mention a few.this is your bodies way of telling you things are wrong and damage is starting to occur.If you have polycythemia and were diagnosed and thus treatment began your prognosis is good for a semi normal life. In my wifes case she was misdiagnosed and undiagnosed for 3 years and thus went untreated all this time.My wife is very lucky to be alive although her quality of life is near zero .The mortality rate is very high even after 16 months of non treatment from onset of symptoms.The thickened blood slows down the circulation process therefore starving parts of the body for much needed oxygen which causes permanent damage to the brain and organs.The forgetfulness ,concentration difficulties and inability to complete tasks are all things that the oxygen starvation to the brain has caused.The thickened blood  also causes abnormal bleeding from ruptures in veins.With the blood so thick," my wifes looked like grape jelly it was so thick" it causes extreme pressure on artery and vein walls.This thickened blood causes stress on the heart and greatly increases blood clots and chance for heart attack and stroke.It has been such a long road for us.My wife became unable to work in august of 2006. Her symptoms appeared in the spring of 2005. I found her in the pick up white as a ghost gasping for air with heart palpitating and broke out in a cold sweat,that was august of 2006.She rode the tractor for our family business of 25 years at this point she couldnt work anymore ,she was always outdoors tending flower and vegitable gardens, riding the mower and camping out.She progressively got worse and by summer of 2007 could not even do household duties and spent about 80 % of her life in bed fighting  pain and fatigue.I tried but just couldnt do the lawn business house work and outdoor work at home and maintain my factory job of almost 28 years. I had a fairly sizeable 401 k and only 3 1/2 years to retirement.After careful thought i decided to quit my job and buy cobra insurance for my wife with income coming from dividends off my 401k and  our lawn business ,i needed this flexibility to take care of my wife and our business and home, i just figured as sick as she was it wouldnt take to long and she would be on medicare and receiving a monthly check for disability. I was so wrong i didnt realize how unfair and how long it took to get disability after all i personally knew several people that were drawing disability and were insured with medicare and they were no where near as sick as my wife.I didnt realize you had to go bankrupt and loose your home trying to get a benefit  you have payed for all of your life. At least the people who eventually win get the back pay and get a portion of their life savings back.I left my factory job in feb of 2008 she filed for disability that same month .The next year would be a nightmare i still haven't woke up from. She was denied disability in may 2008. In june the company i had been contracted to for lawn maintenance for 25 years breeched contract and discontinued my lawn service.I didnt see this coming i should of sold the lawn business and kept my factory job,this one company with so much attention paid to them over the years was 80% of my business.I switched to higher dividend paying stocks in the banking and shipping stocks.with my ira to temporarily makeup the income loss in our mowing business until she started getting disability.In july of 2008 again she was denied disability.We were told it could be 2 years before she would get a hearing in front of an ALJ but not to worry if you could financially survive until then that that stage of the lengthy disability process was where disability was most often granted.Then in october the unthinkable happened the worst market crash in 80 years. My ira went from 138,000 to 40,000 in three short weeks I was in the banking industry and reits in which some imploded and in shipping in which 75% value was lost and dividends suspended. With no income and my commitment to my daughter to finish her last year of college and need to keep my wifes cobra insurance it wasnt long 6 months later it was gone. Broke in april of 2008. We started selling all of our personal belongings and heirlooms and even appliances and recreational things to survive.We then found out we owed 20,000 in taxes because the ira loss was not deductible, which to this day i dont understand .Every body kept telling me dont worry the market will come back you will get it back,people dont understand if you were living off theese accounts that dropped 75% they dont come back since you are withdrawing every month they never come back they are gone.We became 7,000 in default on our home,and i thank the Lord after a long 13 month trial we were granted a mortgage modification or we would be homeless.In MAY 2009 we were bankrupt. To this day i have not been able to grow any of our business back or find any employment .Somehow we have managed to keep our home although a payment behind the 1400 dollars a month  allows me to make a payment every month and keep them from foreclosing on us.I am scared my wife will now die.Before i started getting this 1400 a month last december we were getting food stamps energy assistance and most important my wife had medicaid insurance.I figured when i started getting my early retirement check they might cut our food stamps down a bit and maybe make her pay a deductible when she went to the doctor. I was wrong again they cut all food stamps and energy assistance out and will let her stay on medicaid if i send a check to them for $476 a month.After i pay only the most important life sustaining bills i am left with only $200 for food ,cleaners and hygiene products gasoline and other things . As things break we cant fix them we are down to 1 vehicle and soon we will be a foot because theres no money to maintain it.The cut off line for any state aid is $1250  a month for 2 people .Naturally  i cant send the division of family services $478 a month when we have to eat out of trash dumpsters and buy the way i have fed my dogs the last couple of years with dumpster food.My wife desperately needs medicaid or medicare.No doctor will treat her because she has no money or insurance and owes doctors over 6,000 $.She doesnt qualify for free medical services because of my whopping $ 1,400 per month.She hasnt had treatment which only consists giving blood at the local blood center but you blood has to be tested and then a prescription wrote before they will blood let at the blood center.I am exhausted i havent seen a doctor or a dentist in 5 years ,my wife hasnt been seen by a doctor in 8 months and most likely will die because of the the mis conduct of the social security administration and the misconduct of the ALJ that works for them.It is a crime and against the law for any other insurance company not to pay on a legitimate claim,Its too late for us our lives have been damaged beyond repair we cant even buy our kids or grankids birthday or christmas presents we are so depressed the thought of suicide takes place almost daily.Theese are the medical problems my wife has and yet repeatedly been denied the benefits to sustain life that she has payed for her whole life. polycythemia vera, non alcahol liver disease or "NASH" ,hyperlipedemia,hyperthyroidism,osteopenia trending toward osteoporosis ,degenerative disk disease with a tilt in the spine,profound hearing loss,depression and pre diabetes just to name a few.All of these conditions either cause fatigue or pain or both.The ALJ Stated that my wife cant be in great pain because she doesnt take narcotic pain medicine no doctor will give her prescription strength pain medication because of the danger associated with her liver disease the ALJ also says her hyperlipedemia is controlled with medication another false statement almost everybody knows you cant take chloresterol  medication when you have liver disease The judge never mentions her liver disease in his ruling the whole twelve pages contains more of the same, statement after statement in which most of them are false. In closing i hope all of you people that have polycythemia vera got a diagnosis and thus treatment early when symptoms first appeared if so from my research it appears you have a chance of living a semi normal life.I pray that no body goes undiagnosed and or not treated.Here are the things i have learned in the6 year nightmare i have been in.Polycythemia vera is a bone marrow disease or cancer in which a mutation to a gene occurs causing the bone marrow to over produce red blood cells and often times affects the normal production of white cells and platelets .This mutation occurs most of the time due to exposure to toxins in other words you are not born with this mutated gene .In my wifes case , they built a power generating station within a few hundred yards of our house and my wife became ill a litle over a year after they started generating power .My children and i have always thought it was the power plant that made her sick.I had my well tested ,a very deep well 738 ft deep and the test that the county did showed it was contaminated with nitrates and other things and unfit for human consumption. It  has been and still is contaminated we havent drank the water since finding out it was contaminated but still have to do laundry, dishes and bathe in it.The treatment is very simple giving blood every week or two until the viscosity or thickness of the blood is near normal and then as needed bloodletting to maintain the blood where it is near normal.Polycythemia causes fatigue and after bloodletting my wife complained of severe fatigue a couple days after bloodletting.Giving blood gets rid of the overproduced blood cells but there are drug regimens that supress the manufacturing of red blood cells.I dont think that getting away from the toxins that caused the gene to mutate will reverse the mutation but i think it might slow down the progression of the disease.To every body please listen the disability program that you pay for out of each check you must pull together and fight for Social Security Disability reform write you congressman, contact the social security coalition at ssdcoalition@hotmail.com When you get sick and cant work you need money then not three or four years later when your bankrupt or dead.Its  fraud its descrimination.My wife worked hard i worked two jobs we raised 2 children and saw them through college we saved we paid for disability I personaly know several people getting disability and medicare they arent near as sick as my wife why do they get it when my wife doesnt thats discriminationThis is fraud collecting money and then not giving the benefits promised.People are dying who never get disability.My wife will die without treatment She doesnt deserve to die she did all the right things she has been a great mother and wife. I am so scared of the future without the money and medicare that disability should bring we are facing hunger and homelessness and suffering from sickness without getting it.God bless thx for taking the time to read  signed DOBB
dobb dobb
5 Responses May 5, 2012

Hi ,
I am sorry to hear about your wife. I am a mother of three and am suffering with polycythemia as well. I have applied twice for ssi been denied, went to court, the judge lied and twisted things. Accused me of making things up and putting ideas in my drs head. I had an attorney who didn't look at my case until the day before, that I hired months in advance. Is this a pattern? I have a foot thick stack of records , my spleen was the size of an nfl football and was removed. Now I'm on hydroxyurea because i couldnt tolerate phlebotomy and had a possible tia and clot in my heart. I don't know how long I've been without treatment either. I hope you and your wife can get through this.

I am so sorry to hear this ordeal your wife and you are going through. I was first diiagnosed at 48. I understand now why I have always been fatigued, forgetful and unable to attend to task or complete in a timely manner...and yes depression.. I have worked in healthcare 15 years...this dx is debilitating . At least I know now why I have struggled I am not crazy..but I do persevere. Because I myself did not have insurance, I did not follow up with my Hematologist. 2 years forward to date I was hospitalized for a week with symptoms of a mini stroke or heart attack.. I am only 50..physically active and was searching for a job in Florida to relocate and be closer to my son and daughter. The specialists there have said my diagnosis has progressed now so it is not just giving blood now that would be the main part of treatment. Moving forward over a month now, I am being seen by the hematologist I had seen before. I am currently awaiting my bone marrow biopsy results to check on the progression. It will then be decided if I need to be on a chemo drug and which to be more effective. Currently I am on Agrylin, to keep the platelets lowered, 4 x a day, baby aspirin and Vitamin D,1200 units daily)found out also my bones are spongy?:( ) I understand why others whom have this illness wonder when it will end. I also thought this dx was genetic not an environmental toxin mutation. My dear father had passed away at 57 of Cancer. I am scared. I cling to hope and trust in my hematologist that this is treatable although advanced. It is also scary because I don't know what to do re work in future. I now also have pain in my bones, not just joints. Tomorrow I follow up re Right Knee MRI..degenerative. Thurs follow up with bone marrow biopsy via chemo tx drug. I pray my bone marrow is not scarring. I never realized or expected this to progress. Just thought I had to give blood once in a while. ...now PV affects my WBC , hematocrit, hemoglobin, potassium, as well as Platelet counts. This desease hurts. Please do not give up and I pray many prayers for you and your wife. You both are not alone. Yve

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I was diagnosed with PV in 2009 when i went in for a hysterectomy. I was floored because for years i was put on inhalers/steroids and other breathing treatments. Heart pills etc no onr found this prior. And i had c-sections not to mention blood taken regularly to check the levels of the heart medicines they had me on. No one can tell me how or why this has occured. Its scary and very confusing. There are days i can't breath. And the tingly numbness in my hands and feet passed annoying long ago. Im 45 and i feel 95 at times. Why how and what made this occur

just letting you know we hav a group on facebook called..polycythemia vera australia..aimed at getting australians with pv together

Hello. Just read your statement regarding your situation and your wife's polycythemia vera. I have been diagnosed with the same insidious disease. My blood is so thick they can't do a big enough draw to even evaluate changes. I have a Medicare Advantage plan that helps. It took quite awhile to diagnose my condition. My hemotologist finally decided to try a course of Hydrea which is a powerful drug with a great many awful side effects. I am frightened. My life is narrowing day by day. Don't think I can work as I have pain in my back and joints.and bout of dizziness and nausea I had constant horrible migraine headaches for about 2 years before I got a diagnosis of polycythemia vera in the last part of 2012. Now the headaches are gone as I was given Lisinipril for high blood pressure. It actually knocked out the headaches and has helped with blood pressure. The new medication, hydrea is in my cupboard. I haven't tried it yet because I am scared after reading all the side effects. I think my hemotologist gave up on anything else since they are unable to get enough blood through phlebotomy. I can't imagine working but need to as our income is low with just my husband working as a security officer. I am scared and see how this disease is a painful and horrible reality. I doubt I can get SSI. My heart truly goes out to you and your wife and I pray a way will be found to treat her and for you to have enough money to live on. Unbelievable your in this rich country a way can't be found to help your poor wife nor can you find help where help should be offered. May God Bless you mightily. Lovingly, Barbara Quimba, El Cajon, CA